Roanoke Woman Battling Rare Disease, Wegener’s Granulomatosis
March 16, 2013
Wegener’s granulomatosis is a rare disease, affecting just a few out of every 100,000 people, including a woman in Roanoke.“Wegener’s granulomatosis is a rare disorder in which blood vessels become inflamed, making it hard for blood to flow.”
Jenny Mays-DeLorenzo found out she had it when she was 17. She’s 41 now, and it has been an uphill battle ever since.
At the age of 17, Mays was a star athlete who had her whole life in front of her until a few weeks after surgery on her sinuses.
“Because I was coughing and throwing up blood by the buckets full,” she recalls.
About 17 doctors and some six weeks later, Jenny got her diagnosis. She was suffering from an extremely rare disease shared by just four other people in the country at the time of her diagnosis, according to Mays-DeLorenzo.
“It’s Wegener’s granulomatosis. It’s an auto immune illness. It can really infect anything it wants to.”
Over the next 23 years, Jenny would undergo nearly a dozen surgeries to remove masses that would form in her body. In the past two years, she has been forced onto dialysis as she awaits new kidneys.
“If I sit around and dwell on it… but I try not to. You know, you ask the question, ‘Why me?’ said DeLorenzo.
“She has been brave about it all and has weathered the storm. And we hope she will continue to weather the storm for many years to come,” said Jenny’s father, Clarence Mays.
But now the challenge is as much about money as it is the disease. Out of pocket expenses after insurance will run into the hundreds of thousands over the rest of her lifetime.
But as Jenny has proven many times in the past, challenges are there to overcome.
“Maybe it’s because I’m supposed to be the one that shares the information about Wegener’s and how it affects other people. Because most people in my position, I think, would have given up.”
Jenny is now working with the Memphis nonprofit National Foundation for Transplants, which helps people raise money to offset the costs associated with transplants.
A “dance” is being held on March 9 in Roanoke, which includes a silent auction with all proceeds going to Jenny. That’s at Mountain View Center at 714 13th St. SW in Roanoke. Tickets are $35 per person or $65 per couple. The William Penn Band will be performing.
Donations can be made online here where you can select Jenny under the “Find an NFT Patient” function.
Read more at WSET.com. Written by David Tate.
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